New person who is caregiver for spouse and finding no one to talk to

@annie1946 I have to do this more often

@jenniferkr we do have a cafe I hope to take my husband this month

@banjo5
My husband had the blood test (p-Tau 217) to determine if his dementia is Alzheimer's. If it was Alzheimer's there are infusions that can be given to slow the progress (Kinsula or Leqembi). There was another blood test he had that has something to do with Parkinson's. Both turned out to be negative in his case but it helps them narrow down the diagnosis.

@jenniferkr What is hard to grasp, for me, is that they apparently favor/care more for their friends than for their own family. I know we aren’t as interesting, to them. But, my family was more important to me, than anyone else in the world ! I wanted to see them, be with them, talk with them. I understand we aren’t all alike, but my heart can’t understand leaving family out, to the biggest extent !

@trav77 Keep on this site. People care.

@dederickve I agree 100%. Family should take priority and always had for us. In some ways I suspect that it is difficult to accept and they feel their loved one with dementia is alreay gone. Very tragic. I share with my husband memories of our life's experiences that he does not remember. It brings so much happiness to him. He may not remember but he lives it again. Too bad the family members are missing out on some joy that remains.

@banjo5 Welcome to Mayo Clinic Connect! You have joined an exceptional group of caregivers! Ask them anything and they will tell you how it really is based on their own experience. It may even be helpful to read back a few pages just to familiar yourself. And no question is ever too dumb ask!

Welcome! I have been a Caregiver for a long time! This week I had to bury my spouse of 53 yrs. of marriage! I thought I was not going to be able to get through this! I was overwhelmed at first and then all my family and friends somehow made it easier! Please know I will listen and respond! It is sad that friends and loved ones don’t want to know what you are going through! I cannot imagine how you are feeling! That being said when all is said and done you will be able to say I stayed and helped the best I knew how!!🫂💕

Hello - I'm sorry to hear what you are going through. Yes, this site is helpful. I would *really* encourage you to also join other groups that offer zoom support group sessions as well, such as Alzheimer's association, Lorenzo's House, etc. I'm not sure where you are, but also any groups that are in person by you. Also, *please* use the free 24/7 hotlines to talk with someone - they are *very* helpful. 800.272.3900
https://www.alz.org
https://www.lorenzoshouse.org - they are specifically for younger onset (my wife)

After about 4 years I have found a couple friends who come regularly, but the rest MAY come if I remember to invite them. My wife, Donna, is mobile in a limited way with a walker, but loves people and is still fairly smiley when others are here. I do feel alone much of the time but my therapist and a good friend are pushing me hard to get out and do something for me - start to get MY life back --- the guilt of having 'fun' without her can be crushing at times - but I know, for my own health i need to! This disease is terrible. I feel the pain is worse for me than when we lost our 13 year old son suddenly.
Another phrase about 'seeing the light at the end of the tunnel...' I think my job is to help Donna see any light, and especially at the end of the tunnel..
By helping myself regain better health I think i will be able to help her.